When Your Care Is Not Their Priority

One would think that patient care is the linchpin on which healthcare turns and the most important consideration of providers, yet these days there are instances, too many of them, when your care is not their priority.

I shy away from this topic. It's painful to consider, risky to acknowledge, and might seem self-serving, you know, the whining nurse looking for sympathy and an easier ride. But the day nurses stop educating and advocating for patients is the day we lose our souls, and patients, together with those who care about them and who might one day themselves become patients, have a right to understand how healthcare works and a duty to join with us to make it better when there are deficiencies that threaten both individuals' health and safety and public health and healthcare overall, now even with its astronomical bottom line not assuring good clinical outcomes or even basic safety.

Just a few days ago popular medical blogger KevinMD sounded the clarion call, writing about the need to reduce nurse burnout (http://www.kevinmd.com/blog/2016/01/reduce-nurse-burnout-treating-nurses-well-treat-patients.html), and noting that "the most overwhelming parts of nursing are the constant system failures" and that "health care organizations . . . function in a way that requires nurses focus more of their limited time and attention diagnosing system needs rather than focusing on patients['] care." That's not about making life cushy for nurses; rather it's the reason your pain medication is late, very late; your call light unanswered for an hour; your questions not heard, much less answered; and the significant decline in your condition unrecognized. Your nurse isn't off sitting in a break room somewhere absently thumbing through a tabloid while chatting on the phone with her boyfriend and waiting for her nails to dry. More likely your nurse hasn't sat down anywhere since arriving at work, her boyfriend long since gave up hope of being able to talk with her at all on days she is working (if he hasn't departed to take up with a more available partner), and she can't remember when her work-worn hands, chapped from being washed so often, last had a manicure.

Writing in The New York Times the very next day, Robert M. Wachter noted the problem of "businesslike efforts to measure and improve quality" having the result that "even superb and motivated professionals . . . come to believe that the boatload of measures, the incentives to 'look good,' had led them to turn away from the essence of their work" (http://www.nytimes.com/2016/01/17/opinion/sunday/how-measurement-fails-doctors-and-teachers.html?src=me&_r=0).

Both writers describe the problem of provider burnout and turnover; beyond this there is an abundance of data demonstrating the correlation between such variables as nurse staffing and clinical outcomes. Today I add my voice, telling you that the problem extends beyond hospital walls and into your own living room, which is to say that the beast of burnout is alive and well in home healthcare, too, with its fire-breathing ways threatening the clinical assessment and care you receive from the one who perhaps is the only healthcare professional you currently see. While hospitalized, patients see many doctors, nurses, technicians of various sorts, and perhaps therapists, dietitians, social workers, and others, and behind the scenes pharmacists are reviewing every drug order, a radiologist reads x-rays before the ordering doctor ever sees them, "case managers" are overseeing care, and more, so if something is missed or an error made, there is some likelihood that someone will notice. But it's a different story at home.

There, it's you, and your nurse and/or therapist(s) who visit intermittently (and never together, as Medicare and others frown on that no matter the benefits of joint practice and collaboration. Indeed, "care coordination" is required, but not permissible face-to-face and in the presence of the patient. Go figure.). If your home healthcare clinician misses something or hurries through instructions so that you don't understand exactly what to do the consequences can be grave before anyone else has occasion to notice.

The Centers for Medicare and Medicaid (CMS) determine what Medicare will reimburse and how the amount is determined. Most other insurers follow the CMS lead. This has resulted in a lengthy and cumbersome assessment tool along with a slew of documentation and "quality" requirements that nurses and therapists must complete. CMS further stipulates exactly which services within each professional discipline are reimbursable, and the requirements beneficiaries must meet to be eligible for any services in the first place. Clinicians must document, repeatedly, precisely which qualifying services have been rendered and that patients who received these services were verified, over and over, to be eligible for them. Individual states toss in additional parameters their surveyors will assess, as do accrediting bodies and organizations that purport to evaluate various forms of quality and bestow distinctions accordingly, or not (the "Magnet" designation for excellence in nursing is an example).

So when your nurse arrives on your doorstep for the very first time, no matter what problem or diagnosis you have, no matter what you need, how you feel, what your questions are, or what you already know, she or he will "teach" you how to be safe in your own home, even in the absence of any discernible safety risks, dangerous conditions, or lack of understanding on your part. Your nurse is required to determine whether or not you have received influenza and pneumonia vaccines and if not, why; whether or not you are depressed; how long it takes you to rise from a particular type of chair, walk ten feet, return to the chair, and sit down again; your nutritional risk, probably using a tool that doesn't actually measure risk at all; the likelihood that you will develop bedsores, again often using a tool developed for inpatient use whose indicators as operationalized there have little meaning in the home setting, and more. Your nurse is required to have you demonstrate, not just explain, how you step in and out of the bathtub or shower, how you dress yourself, how you walk, and how you get in and out of bed and up and down from a chair. The nurse must assess your pain and ask you to rate it on a ten-point scale; if you have no pain at all you still must give it a number. The nurse must discuss advance directives, your rights and responsibilities as a home healthcare patient, what constitutes an emergency and what to do if an emergency arises, how to contact the home health agency and what to do if you have a complaint, your treatment plan, and if for some reason you are inclined ever again to let this person into your home, when she or he will return and how often. Your nurse may be required to screen you for ebola risk or any other hot button issues of the day, and will have forms to fill out and forms for you to sign. Then your nurse can begin to examine you and assess your particular needs. He or she must look at and make a record of all the medications you have on hand and must reconcile this with the list provided by the hospital or your doctor. If you need to learn how to care for a wound or give yourself an injection or check your blood sugar or anything else, the nurse must teach you that. The nurse must be sure you have at least a basic understanding of your health problems and know when and how to reach your doctor. And the nurse must be "nice," assure that somehow in spite of all of this you are "satisfied," and discreetly keep repeating that she or he is providing "excellent" care so you will remember that word and rate the agency's services as "excellent" when completing your post-discharge survey.

In addition, after leaving you the nurse will need to spend at least one to two hours documenting this visit and filling out the required forms. Yours will be but one of five or six visits your nurse is expected to make that day, perhaps one or two less if some of the patients are new to home healthcare. Your nurse will travel through all kinds of weather, traffic, and road conditions, will deal with the absence of parking spaces and house numbers, and will respond promptly to all calls and email. If you or any of his or her other patients need lab tests, your nurse will draw the blood and/or collect other specimens, drive to some lab, find parking, walk to the appropriate location, do more paperwork, and then go back to the car to resume the day, without an extra penny or allowance for the time and effort this requires. Your nurse will attend endless meetings, complete online courses and in-person training whether or not she or he already has demonstrated mastery of the topic, and jump through a seemingly infinite number of hoops to obtain supplies for you, whether a gauze pad or an oxygen machine or anything else. Your nurse will chase doctors, track down those lab test results and see that they get where they need to go and that appropriate action is taken, and make many, many phone calls from home at night. Your nurse also will have his or her documentation questioned by people who haven't ever seen you and often haven't seen any patient at all for years, if ever, but who want to maximize the dollar amount to be made from your case. And, generally your nurse will be paid a modest, flat fee for making each visit to a patient, period. This means that time spent going to and from labs, making phone calls, sitting in traffic, documenting, and all the rest is uncompensated, with meetings and required training often compensated at a lower, below-market rate because those are not billable activities.

If you believe nurses actually do all of this every time they admit patients to home healthcare please message me: I have a bridge for sale in Brooklyn that you'd just love, and some land in Florida, too!

For one thing, our patients are sick or we wouldn't be there. Often they are elderly and have many problems at once. CMS requires that they be "homebound," which, while not meaning that they need to be absolute shut-ins, does mean that going out is a hardship and is something they do infrequently, usually for essential medical appointments. Suffice it to say they're often weak and frail. And if people just have returned home from the hospital it's a sure bet they're tired, because these days hospitals aren't places where people can rest. Nurses know no one in these circumstances can tolerate hours of "assessment" and "instruction."

Nurses also need to self-protect, the "Don your own oxygen mask first" principle. If nurses work eighteen hour days in order to meet requirements and see enough patients to make the money needed to pay their bills they'll soon hurt someone or have an accident themselves. So something has to give. Similarly, being compensated on a per-visit basis and having a "productivity" quota to meet for their employers, nurses need to be sure to make enough duly billable visits. If patients cancel appointments, are admitted to the hospital, suddenly decide to go stay with family at another location, or miss scheduled visits for any other reason their nurses suffer financially and may be penalized for failing to meet the productivity quota, unless it is possible to add more and more visits to subsequent and already full days. That breeds haste, less than thorough care, and heightened potential for errors.

Whatever the specifics of your situation, this may mean all the drop-down boxes on your medical record aren't checked on the basis on an actual assessment. Your nurse may have determined that it was more important that you be able to manage your IV line than that you be screened for ebola risk or that you demonstrate stepping into the shower, but those parameters still must be documented. So in the best of circumstances the nurse makes an educated guess, and uses the visit time to meet your most pressing needs rather than marching through all the required items at the expense of your and/or his or her own welfare.

But it takes an experienced nurse with keen clinical acumen to know which corners safely can be cut, as well as a certain amount of savvy to avoid detection in doing so. The less experienced and less well initiated do burn out and move on, if they're not first caught in the snare of an unfortunate error of judgment or practice. And even the veterans can guess wrong, or, being human, be swayed by such self interest as the need to compensate for canceled appointments by packing more visits into a single day than can be managed safely and well.

Not long ago I was called to see a patient who told his Physical Therapist that he had developed a sore on his foot in the hospital and although he thought it had healed it was bothering him. I found a massive pressure ulcer that could not have developed in the short time the patient had been home, meaning that the nurse who admitted him to home healthcare and determined that there were no needs for nursing, and that the patient needed only Physical Therapy, never examined that foot, even though the patient's particular problem put him at high risk for just that sort of wound in just that location. Instead, the nurse documented that the patient's skin was intact with no lesions or irregularities present. The untreated wound that the nurse overlooked and the patient couldn't see subsequently had significant adverse consequences for that patient.

Even more recently I read the clinical note of the home health nurse who saw a patient I had followed in the hospital. The patient had a complex medical history, but was hospitalized for a heart attack and had needed open-heart surgery. The home health nurse documented extensive diabetic teaching, and not a word about the patient's cardiac status or care. The patient had been diabetic for years, and control of that condition was not a current concern. A colleague who read the same note remarked that it looked like it had been "cut and pasted" from a standard template, something that certainly would have made the documentation process easier and faster. Although I imagine the nurse who saw this patient was "nice" and the visit may have been very pleasant, the job that needed to be done wasn't, and the patient was left at risk and uninformed. I wonder if she remembered to respond that she had received "excellent" care when her post-discharge survey arrived.

A Physical Therapist colleague has told of discovering that another therapist had been caught pushing an elderly, blind patient to hurry her through the session, while yet another therapist saved time and made money by having patients sign multiple visit forms when only one visit was made. That's fraudulent, and if caught would have cost the therapist his license, a hefty fine, and perhaps jail time, but it happened.

I don't believe people choose careers in healthcare and complete rigorous collegiate and often post-graduate training because they want opportunities to push elderly blind people, ignore wounds, teach irrelevancies, or commit fraud. That these happen is an alarm all need to hear, warning that something is going terribly wrong among good people who once had high ideals, passion for a profession, and a commitment to service. All too often in 2016 paperwork and profit are being prized over patients, supposed measures of quality are valued above quality itself, and looking good is valued more than doing good. The toll on providers is beyond sobering, and when you are a patient the cost to you may be extreme

When Your Care Is Not Their Priority